Knowledge generated from genomics research is currently being integrated into diagnostics, preventive medicine, and therapeutics. Genetic data has also helped accelerate the development of new pharmaceutical medicines.
Only recently have data sets containing genetic information become large enough to spot the rare genetic variants responsible for specific diseases. In this vein, just last month, the pharmaceutical company GlaxoSmithKline invested $300 million in the consumer genetics company 23andMe to gain access to more genetic data.
Beyond drug development, in the US and several European countries, pharmaceutical companies are now allowed to link the price of some of their medication to the value it generates for patients and the health system. In many cases, such indication-based pricing results in higher prices for the subgroup of patients who benefit the most, and these prices can be determined based on one’s genetic make-up.
The above examples illustrate both the tantalizing potential from medical innovation based on genetic data as well as growing concerns about individual genetic data privacy and discriminatory treatments based on our genetic makeup. For example, there may be unintended consequences of shifting the attention of pharmaceutical companies toward precision medicines.
Concerns related to the misuse of genetic data are also growing in part since our knowledge base that links genetic factors with complex socioeconomic outcomes such as educational attainment is growing rapidly. Thus, societies might face critical questions, such as: should molecular genetic information be considered in the design of social and economic policies? How should genes come to play a role in society’s thinking about socioeconomic issues?
The successful use of genetic markers in designing public policy is likely tied to how the results of analyses using genetic data are communicated. As an example, suppose that genetic screening can reliably predict a learning disorder that is a function of many genes, each with a very small effect. If a single score is calculated from an ensemble of genetic markers that have well validated significant (but individually small) effects, this score can be interpreted as a measure of an individual’s risk for the disorder, which, in many situations, may take psychologists years to diagnose.
Armed with knowledge of whether their child is at an elevated risk for poor learning outcomes, parents can now make different investments years prior to receiving a formal diagnosis through conventional means. Regulations that effectively support this type of communication and limit unintended consequences may assist in raising child development welfare.
However, if the genetic test results are poorly communicated, unintended consequences, e.g., due to an over-response to the size of the effect of the genetic predisposition, may lead parents into making a wrong decision that might accentuate rather than mitigate this genetic predisposition.
Much scientific research using genetic data can inform contemporary policy debates. While scientific evidence is replete with uncertainties, integrating genomic research findings in evidence-based policy offers both great potential rewards and risks for individuals and society.
Currently, millions of individuals are purchasing genetic testing kits from companies such as AncestryDNA or 23andMe. When individuals purchase these kits, they opt in to allowing the companies to include their anonymized genetic information in databases that can be sold to pharmaceutical makers for research purposes.
To unlock the value of genetic data requires careful communication of scientific insights that avoids sensationalism and stigmatization as well as demonstrates a consideration of the broader impacts of this knowledge for society. The success of integrating genetic research in policy discourse also will require society to move beyond discussing whether a specific outcome or trait is primarily a function of genes. Instead, the discussions should mirror those considering other targets for policy intervention and ask whether the available evidence suggests that a policy would pass a cost–benefit test.
The likely success of genetics influencing different policy domains depends on policy debates not sowing fatalism about change, but by evaluating specific, practical tools that would reorganize the composition of those targeted by policies thereby improving social welfare.
© Steven F. Lehrer
Read Steven F. Lehrer’s full article, written with co-author Weili Ding, “What is the role for molecular genetic data in public policy?”
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